"Out of suffering have emerged the strongest souls; the most massive characters are seared with scars." – Khalil Gibran

A.S. Face 2015: Carrie Wilcox

My name is Carrie Wilcox. This is 2018 and I am 40 years old. I was diagnosed with ankylosing spondylitis in 2015.

‘Don’t baby your hips. Wait until you get to be my age. Everybody has back pain’, sound familiar? This pain started intermittently for me at 17 years old.

Like many others with ankylosing spondylitis years passed before I sought answers. Because of dismissive comments such as ‘everybody’s back hurts’ and back pain runs in the family. Why was I intolerant when it came to this pain and stiffness? Why was everyone else so much stronger towards pain than I was? How are they functioning so normally? Why am I such a baby? These were questions I would ask myself. So I would hide my pain and push through.

During a particularly rough time in my early 30’s I sought answers from my primary care physician for the, now, all over body pain. At one visit, without imaging or blood tests, I was diagnosed with sciatica. Ice and rest.

When ice and rest failed I visited several specialists, reluctantly referred to by my primary care physician. There was a brain MRI, offered anti-depressants, was told nothing is wrong, you can’t be in that much pain, it would hurt anyone to be pressed like this. During that time I received a clinical diagnosis of endometriosis and was prescribed birth control. The doctor blamed endometriosis causing the pain in my legs, ‘I don’t know about your arms’, she says. Wanting relief I pursued an exploratory laparoscopy. I had a few small patches of endometriosis removed and diagnosed with adenomyosis. After the laparoscopy I went back to my primary care and she callously stated, ‘that small amount of endometriosis wouldn’t cause that much pain. This is something you need to learn to live with.’ Then she added infertile to my chart. Later, miscarriages would prove that to be true.

Worse than living with a chronic illness is living with an undiagnosed chronic illness. Physicians and specialists that don’t find anything, vocally doubt you. That doubt is contagious and spreads to your loved ones.

Through the years I tried many at-home remedies; milk thistle, turmeric, Himalayan salt, hot Epsom salt baths, heat, ice, stretches, chiropractor, cinnamon & honey, aerobics, yoga, oils. None of those remedies helped me sleep past the 4 hour mark at night. By my mid-30’s the back and hip pain was relentless, every single day and night. The pain and stiffness kept me up at night; most nights sobbing quietly in another room. Hiding a painful limp and pushing through life every single day. I hid how much it hurt. I had to hide it because ‘nothing was wrong’. I feared being called a hypochondriac, again.

I was 38 years old when my leg began to swell. So much swelling I couldn’t bend my leg. Along with the stiffness in my back and hips, I also couldn’t turn my head. Over the course of a few weeks the pain and stiffness consumed my entire body. I could only manage a hunched over shuffle clinging to a crutch. My regular doctor ordered blood tests and advised I try gluten and sugar free. I also received a rheumatologist referral. As I waited the 6 weeks for the rheumatologist appointment a friend suggested it was gout. Searching for any type of relief I headed to urgent care. The attending doctor felt the heat coming from the swollen joints and ordered a parvo virus blood test. A few days later the results were ‘positive for the parvo virus.’ She says that I needed to let it ‘run it’s course’ and I ‘no longer needed to see the rheumatologist’. I was excited to have an answer, but I chose to ignore her advice keep the rheumatologist appointment. I was scheduled to see the same rheumatologist that almost 10 years before told me during a pressure point examination that, ‘It would hurt anybody to be pressed like this.’ I had outward symptoms this time, swollen joints. He couldn’t dismiss me again.

The parvo blood test was read backwards, said the rheumatologist. I showed antibodies for the parvo virus, but not an active illness. After an examination, blood tests, x-ray’s and an MRI I was quick to receive a diagnosis. The CRP blood test, which measures inflammation, was 10 x’s over the normal lab range at 104. The ESR, another inflammatory test, was 3 x’s over the range, at 48. HLA-B27 positive, which I don’t put much stock into as it is only a test for the gene. The x-ray and MRI revealed the hallmarks of AS with bilateral sacroiliitis, among other inflammatory results and permanent damage. What is so easy for me to see now and isn’t generally found in a quick google search is not only does AS cause back and hip pain, but inflammation of tendons, ligaments and large joints. That explains the un-diagnosable all over body pain I was experiencing all these years. I often wonder, how can so many doctors get everything so wrong? And be so confident?

Despite living with AS for this long I am still learning. I am also learning to slow down when I need to and pushing back the gnawing guilt for doing so. I am learning what medication regime works best so I can function, because living with untreated AS caused irreversible damage (bone spurs, erosion, sclerosis, scoliosis, bulging discs) and a constant state of inflammation. I am lucky. I am lucky that I am not fused in a hunched position. I keep active and keep my spine straight, so when I finish fusing at least it will be straight. I have a diagnosis, but that doesn’t put an end to people doubting the type of pain that comes with AS, comparison to injuries that heal, and dismissiveness. What a diagnosis does put an end to is holding my head up in the face of this cruel world.

To not have your suffering recognized is an almost unbearable form of violence. – Andrei Lankov

3 Responses to “A.S. Face 2015: Carrie Wilcox”

Your story hit home so much for me. I to went for years with no diagnosis and that has caused the irreversible damage you also have experienced. My rheumatologist likes to say, we can slow down and make the future damage less with medications but can’t undo already done damage. The long term damage is now something I will be on pain Meds for the rest of my life. I always tell others, if you know something is wrong don’t take a dismissive diagnosis and do the best you can to ignore people telling you that you are crazy bc reality is only you know your body the best. Not taking wrong misguided diagnoses and insisting on tests kept me from becoming permanently paralyzed after my L5 to S1 fusion when I developed sermons fluid at my surgery site, something that never happens unless you are extremely old or severely overweight of which I was neither. By insisting something was wrong bc my whole right side went paralyzed when I laid on the table for post surgery x-rays I got the MRI I needed to show the sermon fluid and was rushed into emergency surgery the very next day. Hearing another story of missed diagnosis makes me mad and scared bc we have lost so many pain free years that we didn’t need to miss if doctors would listen to their patients and educate themselves on the ugly diseases. By ugly I mean diseases like AS that are more common then even reheumatoid arthritis that doctors ignore bc they can’t wrap up a cure or treatment solution into a pretty tied up bow and they are afraid of looking less than competent ever, seemingly no matter the cost to the patient. We desperately need new and improved diagnosis and treatment methods. I advocate for these bc I have a daughter and refuse to allow her to have to suffer they way I have had to and the way you have had to. Thank you for sharing your story!!!!